[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
SEEKING A CURE
Parents and Researchers Dedicate Themselves to Helping Those with Autism
Sunday, June 1, 1997
By Naazish Yar Khan. Special to the Tribune.
Gail Kraska had a normal delivery, and there were no dramatic signs early on suggesting what was ahead for her son Jonathan.
“There was normal development with crawling, walking, everything except language and social skills. The pediatrician would tell us that boys are slow and not to worry about it,” said the Wheaton resident.
Because Jonathan was her first child, Kraska had nothing with which to compare his development. At age 2 1/2 and after numerous hearing tests, Jonathan, now 7, was diagnosed with pervasive developmental delay (PDD), a subtype of autism.
“I was shocked and concerned and have been on a search for treatment and a cure for my son ever since,” said Kraska, who is also the mother of Kirstin, 5. “According to the National Institutes of Health, two out of every 1,000 children will be on the autism spectrum, and, because the cause of autism is unknown, there is no way to prevent it, nor do we have a cure.”
Last September Kraska’s search put her in touch with a new national organization formed by parents and researchers called Cure Autism Now (CAN).
CAN, which was started in 1996 by Portia Iverson and Jonathan Sheshtack, California parents of an autistic child, is dedicated to finding biological treatment and a cure for autism. CAN has raised more than $200,000 through grass-roots fundraising and is funding seven pilot studies to date.
“I read an article about CAN in People magazine, and that same day I e-mailed them,” Kraska said. “My main question was whether there was a CAN chapter in Illinois. I got an immediate response from the CAN national secretary, Ellen Bolte, and it turned out she lived in Illinois too.”
Shortly after getting in touch with CAN, four parent couples (Ellen and Ron Bolte of New Lenox, Gail and Don Kraska, and Rebecca and Warne Crow and Jodi and Frank Stepnowski, all of Elgin) founded an Illinois chapter (I-CAN) “because we felt there was a need to help educate parents and professionals,” Kraska said. “There are autistic children here in Illinois. We share the vision that treatment or a cure for autism will be found.”
Jonathan Kraska is one of 400,000 Americans who have autism. “For the longest time, people thought autism was the result of `refrigerator moms’–moms who didn’t show their children enough affection–but we now know that autism is a medical disorder and not a rare one,” Kraska said.
“I think a common misconception is that children are born with autism. This is true only for some children,” said Ellen Bolte.
“Symptoms of pervasive development range from mild to severe and may be present from very early in infancy or may not develop till the child is a toddler or during his early preschool years.” Bolte, a researcher on autism, is the mother of an autistic child, Andrew, 5.
Autism is the third most common developmental disorder and affects more children than cancer, cystic fibrosis or multiple sclerosis.
“Yet autism receives less than 5 percent of the government funding that goes to these other diseases,” Bolte said. “Most of the children who suffer from autism never recover and are unable to function in our society. CAN believes that we can’t wait for someone else to decide that these children deserve help. The pace of scientific progress can and must be accelerated because our children must not wait any longer.”
There is no medical test for autism. Diagnosisis based on a behavioral evaluation, but Kraska stressed that early detection is critical for afflicted children. Recently, an early screening tool called the checklist for autism in toddlers has been used by physicians at a child’s 18-month checkup, Bolte said.
The World Wide Web has been an enormous resource for Gail Kraska. “I learned that there was (an online conversation area) on PDD and autism every Thursday night on America Online,” she said. “I made new friends and met some doctors and therapists as well. There was also the St. John’s List (which subscribers receive by e-mail), where people post information on developmental delays. I also relied on the Autism Research Institute (headquartered in San Diego), and in Illinois there’s the Autism Society of Illinois in Lombard.”
According to CAN, interaction between concerned parents and researchers in the field will help keep motivation high and the pace of progress rapid. “There’s a lot of information out there,” Kraska said. “We have been taking I-CAN on the road this year by bringing in some of the top researchers in the field of autism so that parents and professionals can learn more about the latest biological interventions and research that areout there.
“Collaboration is a cornerstone of CAN’s policy, and all researchers receiving funding from CAN are strongly encouraged to share their findings with others in the field. The organization is recruiting families where morethan one member is affected by autism aspart of the Autism Genetic Resource Exchange.
“This is for genetic research in autism,”Kraska said.
“It is our goal to create a repository of 100 well-defined families . . . (whose) cell lines and DNA samples will be madeavailable to all qualified researchers worldwide.
“I spend a lot of time in the car,” Kraska said of her devotion to Jonathan.
“We keep very busy between extracurricular activities suchas horseback riding and swimming, therapies and school. I hear about something that could possibly help him, and I check it out. I have to search for whatever’s going to make him better. As a parent, you are the only person who is going to help your child.”
“What do I say to other parents with autistic children?” Bolte said.
“I say, “Get involved.’”
More With Cure Autism Now
Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid.
ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.
The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work.
What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.
The ‘cure’ for Autistics not born yet is the prevention of birth.
The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome.
This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.
Fact: You can’t cure Autistics from being Autistic.
Fact: You can’t recover an Autistic from being Autistic.
Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
Fact: Vaccines Do Not Cause Autism.